Chris A's Story...

My ordeal with this terrible disease began in July of 2002.
At the time I was very big into body building and was in very good shape.
Someone noticed that I had developed a hump on the back of my neck yet I passed
it off as a weight lifting injury and thought nothing of it.

As of January 2003 the hump had not gone away and I had put
on a significant amount of weight. Since I was in a very stressful living
situation I assumed it was because of thought and again thought little of it.

I went to the Dr for a yearly physical and some things were
off. My blood work showed that my thyroid was slightly underactive and the Dr.
noticed that my blood pressure was high, it was about 160/110. He decided he
would put me on levoxyl for my thyroid and 10 mg of lisinopril for my blood
pressure. I asked him about the hump and he told me it was nothing and that it
would go away if I lost some weight.

May came around and I still had the hump, I kept putting on
weight, and my blood pressure was not going done. I was know on 20mg of
lisinopril and 20mg of hydroclorothorazide (this finally got my blood pressure
under control). I thought that the hump might be more than fat so I made an
appointment with an orthopedic surgeon. He came in, he had no idea what the hump
was but he said he could remove it.

In June I had surgery to remove the hump on the back of my
neck. A week later I had a follow up with the surgeon to have my stitches
removed. He said that the lab said that the hump was a piece of fat called
buffalo hump which was caused by a disease caused Cushing's disease. I had never
heard of the disease before this.

I made an appointment with my Dr and he didn't really have
any idea what Cushing's syndrome was either. He made a phone call to another Dr
and told me he had to look at my body for stretch marks. This was the first time
I really noticed that I was covered with thick purple stretch marks. He told me
that we could do a 24 hour urine test to see if my cortisol was indeed high. On
July 11 of 2003 my urine test came back. I had a Urine Cortisol of 76ug/24hrs
with a normal of 3.5-45 and a Urine Cortisone of 167ug/24 hrs with normal of
17-129. Since my cortisol was high my Dr. decided to do an overnight
dexamethasone suppression test. This test came back normal so my Dr. said "Maybe
you were just born with high cortisol". I was not happy with this answer so I
finally got the Dr. to admit he had no idea what he was doing in terms of
diagnosing the disease.

After some research I found out that an endocrinologist was
the Dr that was supposed to handle this type of thing. Since I was living in New
Hampshire at the time I asked my HMO to make me an appointment with one of their
endocrinologists. He was overbooked so my apt was set for September 2nd. The
summer to come was the worst summer of my life. During the summer of 2003 I
continued putting on weight, I was getting more and more stretch marks, I began
having hot flashes, everywhere I went I was dripping sweat. I had diarrhea every
day of the wee, I would get exhausted after I ate and would wake up with rashes
all over my body every morning.

Finally September 2nd came and I had my appointment with the
endocrinologist. After looking at my body he was convinced that I had Cushing's
syndrome. He ordered some blood and urine tests and then his opinion changed.
The urine test came back as a 72 with a high of 70, my prolactin was elevated
and my testosterone was low. Because of the prolactin problem he schedule a
regular pituitary MRI. This MRI came back normal so my endocrinologist said that
since it found nothing there was no way I could having Cushing's syndrome. He
suggest we do another urine test, blood test and a 2 day 11pm salivary test to
see if anything changed. This time the urine came back as 69 with a high being
70, the prolactin was still elevating and my testosterone had dropped again but
the salivary test came back normal. He said since the salivary test came back
normal that I again probably didn't have Cushing's but that we could wait 6
months and see if things would get worse.

By this point it was October and I found this website. I had
not really become very active in it yet but I was recommended to go down to Mass
General Hospital in Boston.

I called up the nueroendocrine unit at Mass General and they
said they could get me in the next week. Again at the appointment with the new
endocrinologist he was convinced I had Cushing's syndrome by looking at my
stretch marks and noticing that I had some weakness in my hands. Everything was
going well till his superior came in. He told me that I couldn't have Cushing's
because my face was not round enough and that my stretch marks where probably
from weight lifting. After this I did another urine and blood test. This time
the urine test came back as a 62 with a high of 70 and my testosterone had
lowered again but my prolactin had dropped down to normal. The Dr told me on the
phone that since I had had one normal urine reading that I could not have
Cushing's but that he would order a dex/crh test to be sure.

Since the nurse was taking the month off I had to wait 5
weeks for my dex/crh test. After I finally took the test it took 2 weeks for the
Dr to get back to me. Once he returned my call he told me that the dex/crh test
had come back normal. I said to him "what if I am in cyclic low, cant the test
give a false reading?" He replied "This test has an accuracy of 100% and does
not depend on cyclical cycles." I asked him to explain the rashes, acne, back
aches, rib aches, stretch marks on legs and below my waste, the sweating and he
did not want to talk about it. He said that the only time he's ever seen the
type of weight gain I've had (106 lbs in 15 months) was with Cushing's syndrome
but I cant have that. He said that the weight was lowering my testosterone and
that he would refer me to the weight center if I would like. At this point I am
without a diagnosis and am waiting to go to a new endo. Below are a list of the
symptoms that I have/had had.